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OBJECTIVES: Patient priority setting projects (PPSPs) can reduce research agenda bias. A key element of PPSPs is a review of available literature to determine if the proposed research priorities have been addressed, identify research gaps, recognise opportunities for knowledge translation (KT) and avoid duplication of research efforts. We conducted rapid responses for 11 patient-identified priorities in depression to provide a map of the existing evidence. DESIGN: Eleven rapid responses. DATA SOURCES: Single electronic database (PubMed). ELIGIBILITY CRITERIA: Each rapid response had unique eligibility criteria. For study designs, we used a stepwise inclusion process that started with systematic reviews (SRs) if available, then randomised controlled trials and observational studies as necessary. RESULTS: For all but one of the rapid responses we identified existing SRs (median 7 SRs per rapid response, range 0-179). There were questions where extensive evidence exists (ie, hundreds of primary studies), yet uncertainties remain. For example, there is evidence supporting the effectiveness of many non-pharmacological interventions (including psychological interventions and exercise) to reduce depressive symptoms. However, targeted research is needed that addresses comparative effectiveness of promising interventions, specific populations of interest (eg, children, minority groups) and adverse effects. CONCLUSIONS: We identified an extensive body of evidence addressing patient priorities in depression and mapped the results and limitations of existing evidence, areas of uncertainty and general directions for future research. This work can serve as a solid foundation to guide future research in depression and KT activities. Integrated knowledge syntheses bring value to the PPSP process; however, the role of knowledge synthesis in PPSPs and methodological approaches are not well defined at present.

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PLAIN ENGLISH SUMMARY: The Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project's Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta. ABSTRACT: Background The Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS. Methods The UK's James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of "people with lived experience" (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process. Results This project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions. Conclusions The DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.

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BACKGROUND: To support patient-oriented setting of priorities for depression research in Alberta, the Patient Engagement Platform of the Alberta Strategy for Patient Oriented Research's Support for People and Patient-Oriented Research and Trials Unit and Alberta Health Services' Addiction and Mental Health Strategic Clinical Network, along with partners in addictions and mental health, designed the Alberta Depression Research Priority Setting Project. The aim of the project was to survey patients, caregivers and clinicians/researchers in Alberta about what they considered to be the most important unanswered questions about depression. METHODS: The project adapted the James Lind Alliance Priority Setting Partnership method into a 6-step process to gather and prioritize questions about depression posed by people with lived depression experience, which included patients, caregivers, clinicians and health care practitioners. RESULTS: Implementation of the project, from initial data collection to final priority setting, took 10 months (August 2016 to June 2017). A total of 445 Albertans with lived experience of depression participated, ultimately identifying 11 priority depression research questions spanning the health continuum, life stages, and treatment and prevention opportunities. INTERPRETATION: This project is a fundamental step that has the potential to positively influence depression research. Including the voices of Albertans with lived experience will create advantages for depression research for Albertans, researchers and research funders, and for patient engagement in the research enterprise overall.

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BACKGROUND: Current research suggests that while patients are becoming more engaged across the health delivery spectrum, this involvement occurs most often at the pre-preparation stage to identify 'high-level' priorities in health ecosystem priority setting, and at the preparation phase for health research. OBJECTIVE: The purpose of this systematic rapid review of the literature is to describe the evidence that does exist in relation to patient and public engagement priority setting in both health ecosystem and health research. DATA SOURCES: HealthStar (via OVID); CINAHL; Proquest Databases; and Scholar's Portal. STUDY ELIGIBILITY CRITERIA: i) published in English; ii) published within the timeframe of 2007-Current (10 years) unless the report/article was formative in synthesizing key considerations of patient engagement in health ecosystem and health research priority setting; iii) conducted in Canada, the US, Europe, UK, Australia/New Zealand, or Scandinavian countries. STUDY APPRAISAL AND SYNTHESIS: i) Is the research valid, sound, and applicable?; ii) what outcomes can we potentially expect if we implement the findings from this research?; iii) will the target population (i.e., health researchers and practitioners) be able to use this research?. A summary of findings from each of the respective processes was synthesized to highlight key information that would support decision-making for researchers when determining the best priority setting process to apply for their specific patient-oriented research. RESULTS: Seventy articles from the UK, US, Canada, Netherlands and Australia were selected for review. Results were organized into two tiers of public and patient engagement in prioritization: Tier 1-Deliberative and Tier 2-Consultative. Highly structured patient and public engagement planning activities include the James Lind Alliance Priority Setting Partnerships (UK), Dialogue Method (Netherlands), Global Evidence Mapping (Australia), and the Deep Inclusion Method/CHoosing All Together (US). LIMITATIONS: The critical study limitations include challenges in comprehensively identifying the patient engagement literature for review, bias in article selection due to the identified scope, missed information due to a more limited use of exhaustive search strategies (e.g., in-depth hand searching), and the heterogeneity of reported study findings. CONCLUSION: The four public and patient engagement priority setting processes identified were successful in setting priorities that are inclusive and objectively based, specific to the priorities of stakeholders engaged in the process. The processes were robust, strategic and aimed to promote equity in patient voices. Key limitations identified a lack of evaluation data on the success and extent in which patients were engaged. Issues pertaining to feasibility of stakeholder engagement, coordination, communication and limited resources were also considered.

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It has been highlighted that the original manuscript [1] contains a typesetting error in the surname of Virginia Vandall-Walker. This was incorrectly captured as Virgnia Vandall-Walker in the original manuscript which has since been updated.

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BACKGROUND: Over the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research. METHODS: An adaptation of the scoping review methodology originally described by Arksey and O'Malley and updated by Levac, Colquhoun and O'Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research. RESULTS: The total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking. CONCLUSION: Further increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient's role in research beyond 'subject' or 'participant', so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.

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